Will our new friend keep up?

Will this scare off a nurse?

Daily Schedule
Always be aware of pain issues. Learn the signs!

6:00 AM Oral Therapy
Oral therapy consists of gum massage and chewing exercises.
Meds Prevacid/miralax/pain meds
Feeding and Dressing
Feeding consists of wet ground and self feeding exercises/tube feeding
Personal Care teaching, wash hands, brushing teeth, make bed and clean up

Utilize color train and choose color of day

7:00AM Breathing treatments
nebulizer treatments with pulmicort, albuterol as needed while utilizing Baby Can Read Vidoes and reading time

8:00AM School Time
Puzzles with focus on completing task, Letters and Phonics, Numbers incorporating OT.
BJU
Follow curriculum or Special Ed teacher visit. Independent completion of task goal/ increase attending skills
Ty moves through the curriculm in 15 minutes increments with breaks.

9:00AM Various Therapist visits

9:30AM Creative Play
Sand and Water, Soft Touch, blocks, paint, animals, Play dough Focus on OT, sensory and cognitive development according to recent instructions from supporting staff. Incorporate color of the day and animal of the week.

9:45AM Water 4 ounces of water

10:00AM Outing and Snack
Summer: Usually cool in the AM so a walk, visit to zoo, Park (two days a week) or back yard play focus on elements, surroundings, social skills and communication also incorporating PT
Use maginifing glass to examine bugs, plants and explore.

Winter: visit to Kids museum, local Aquarium or Mall for walk (social skills in public)

11:30AM Personal Care and Lunch
Meds and nebulizer as needed
teaching wash hands and face and clean up

Oral therapy: consists of gum massage and chewing exercises.

Feeding / table play Feeding consists of wet ground and self feeding exercises/tube feeding/brush teeth

12:00N Nap Time
Audio with classical music or Love and Learning
Water 4 ounces of water

1:30pm Wake up soothing music, interactive play time with focus on transition to activities

2:00PM Outing and Snack
Winter: If weather permits Walk, visit to zoo, Park (two days a week) or back yard play with focus on elements, surroundings, social skills and communication also incorporating PT

Summer: If too hot for TLSO brace, local museum or library, local Aquarium or Mall

3:30PM Personal care
teaching wash hands, face
Water 4 ounces water by tube

4:00PM independent free play
encourging free choice incorporating OT and PT
Use V tech or leap frog electronics, musical insturments, bubbles. Offer activities such as bouncy room, swing, rocking horse.

5:00pm Oral Therapy Oral therapy consists of gum massage and chewing exercises.
Meds Prevacid/miralax/pain meds
Signing Times Sign Language

6:00pm Dinner
Feeding consists of wet ground and self feeding exercises/tube feeding

7:00pm Breathing Treatments
nebulizer treatments with pulmicort, albuterol as needed while utilizing
Baby can read vidoes and reading time

7:30PM Personal Care
teaching, Bath time, brushing teeth, prepare bed and clean up

8:00pm Bed Time

Now...the index~
Oral Therapy
Oral Therapy consists of
1. Gum massages using the index finger. Starting at the upper right gum, using a song or counting to help him understand it is a limited exercise, massage across the gums moving to the front and to the left upper gum. Repeat on bottom gum. Rest and repeat exercise at least twice.
2. Chewing exercises using tubing or a chewy toy. Placing the tubing between his back teeth, encourage Ty to chew with steady firm bites. Pace the chewing to a song or counting. Encourage him to chew 10 times on the right side and then move to the left side repeating the exercise. Rest, allowing him to hold a favorite small toy, then tell him “it’s my turn now” and repeat the exercise.
3. Using a Z Vibe, place it in his mouth and use to stimulate cheeks and allow him to explore. Encourage him to move it with his tongue.

Meds
listed

TLSO Brace
Must be worn 23 hours out of the day!!!

Feeding
Feeding consists of up to 4 bottles of pediasure per day by tube. He can take wet ground consistency by mouth if he is not congested or coughing. Ty has silent aspiration. His recent swallow study indicates he aspirates on anything that is not pudding thick. He has aspiration pneumonia twice in the past 7 months and it is recommended that he only have up to 1 oz of honey thick at beginning of meal and then pudding thick for the remainder due to fatigue. Ty is tube fed to take in the extra calories so his metabolism can keep up with healing required for frequent surgery.

Dressing
Ty is encouraged to explore putting on his clothes and to assist in dressing himself

Personal Care
This includes life skills of washing hands and face, brushing teeth and hair and picking up pillows and toys. Currently we are utilizing hand over hand to teach him but also allow him to try himself. We focus on a few tasks at the time.

Breathing Treatments
Using a nebulizer, Ty receives two Pulmicort treatments per day. He also receives up to 6 Albutrol treatments per day.

BJU
Curriculum designed by Bob Jones University and modified for children with Down syndrome.

Creative Play
Activity to mimic life and incorporate OT activities such as playing with textures, using play dough and blocks to create items, using toy animals and stuffed animals to interact.

Water intake
Needed for proper hydration. By tube because aspiration prevents Ty from drinking more than a sip at the time.

Outing
Needed for social interaction. It is necessary that Ty come to know and interact with others in local area in different settings. Encourage proper behavior in public settings. Less populated settings are necessary prior to surgery due to reduced immune system.

Nap Time
At least 1 ½ hours at mid day. If he sleeps more, he does not well sleep a night. Exceptions are when he is sick or had recent surgery.

Wake up
Transition from nap to play time is hard for Ty

Baby Can Read,Love and learning, Signing Times
Videos and books used for entertainment and beneficial for education

Turning the corner

Its too early to be this happy!

As I sit here thinking about a schedule for my hero I recongnize that we are turning a corner in his care.

He is growing fast and this schedule has to be for him, to create opportunites for him. Social, learning and communication opportunities.

In some ways, I think taking him out of pediatira is limiting him. In other ways, I know it is opening up a new world of learning and growth.

I dont know where to begin but it will be created and posted today!


Well the doctor said wear the TLSO brace 23 hours out of the day...he just didnt say how!

Transitions and the task at hand

Tomorrow we go to see a new ST. Not that I dont love the one we have but we have her as part of the medical daycare program. As the medical daycare program goes, so does she. Awww. Too bad.

I have found sources for his therapy scattered about. I do want to check out the few that I have options about.

The paperwork and letter of medical necessity has been sent. I am waiting to meet some nurses and meantime it will be just me and Artie.

In one week and two days we start our time at home together.
We have a wonderful week before surgery. I have a few friends who are RN's that have kindly offered their skilled assistance should I need escape or time alone. I doubt it. I am so tickled to have him home. Now ask me three weeks from now and see what I say, LOL!

His doc has been kind in providing excuses for me to keep him home...soon I wont have to call so much.

When I go out to pull weeds, he is right by my side. When I clean a room, he is my entertainment and sidekick. When I eat lunch, he does too...so what do I need other than someone else to listen to those precious lungs and check him out? Ok, maybe a run to the Doc's office or a meeting or two.

But all and all, next week is our transistion to home to get ready for surgery. Post op, we will hang out together for a week or so too.

And hopefully by then the transtition to home nursing will be complete. I so look forward to that.

We will stay on our 'home school' schedule through recovery because he loves it.

As far as public school. The special education teacher wants to come out to our house once a week and wants the school provided therapies to come too. I am not sure. I dont want to be tied to the school and get into legal hassles. We will see.

There are a lot of transitions to be made here. I think we are so ready!

Professional Photographer Angela Calderon

Photographer Angela Calderon came over to the Ronald McDonald house in April.

We were hot and sweaty after cleaning our room and packing for the long trip home.

Didnt she do beautiful work?

Days fading together

As I rush around trying to keep our home open to foster children (yup you have to work at it if you intend to really help children) and keep Artie safe for upcoming surgery (now that takes work!) the days have faded together, sort of...one becoming another before I have time to blink.

There are classes to take, inspections and physicals. For Artie there are pre op visits, juicing the right veggies for the right nutrients he needs, and preparing the house for down time to make recovery easier for him. There is caring for my brother and helping him get on his feet. Thank goodness for my dearest husband and all he does to help.

In the flurry of business, the recent xrays were alarming. The hook attachment at the base of his spine is working its way loose. The heat is opressive and it is so hard to keep that TLSO brace on all the time. Here at home we keep it very cool for him. When he goes to the 'medical daycare' center I suspect the brace comes off. I go by often and check on him. I worry about how they pick him up and how they pull him along by the arms. He pulls back. He does the "drop and flop" and at 30 pounds he is not easy to pick up correctly!

I have a hard time trusting...

Another alarming incident occured when I dropped in for a visit...I was sitting in the room in a toddler chair (was I mistaken for one of the children?) and the conversation went this way:

Nurse (new person who is tube feeding a child): I am going over to my daughters school and observe circle time and see what I can implement here for our kids! I spoke to the teacher and she said I was welcome.

Now I am feeling really good at this point!!

CNA (long time person who is picking up the room): I dont know why you are doing that. Its a waste of time. These kids arent going to do anything in circle time. Why do you think Other Nurse quit trying to work with them? They arent like normal kids. They arent going to sit down for anything.

GRRRRRR! Did I growl from my corner?

Nurse (new person who is setting fed child down): Yeah I guess you are right. I dont know. I think we could do some of it.

CNA (who seems to hate her job): You'll see. And dont take offense if I start using a mask in here. I dont want to catch swine flu. I am gonna take care of myself. I dont know where these kids have been.

Me (clearing my throat, speaking up from the corner to both of them): Well I am going, and I will take Artie with me now. (To the nurse)Ms CNA is having a bad day and is unhappy with her job.

I got up and went to the supply cabinet and took all of his tube feeding supplies, milk and diapers. I asked for his lunch that I had made. I was trembling, I was angry. Over emotional, trust gone.

I went on my way. I had to pass by the acting directors office to sign him out...she asked if I was taking him. I explained the conversation in the room and added:

(Me to The Acting Director:)I can take Artie to the kids museum and have circle time. And dont take offense, I dont know what is said in front of my child when I am not here so I can only imagine it is worse since this is what is said in front of him when I AM here. I am taking him with me.

There was a scamble. Apologies forthcoming. Meetings with employees. Reasoning with mom. Notes made. The nurse came out and asked me if I was going to be there a little while longer because as we were working this out, she would love to have Artie come back in the room. She was going to have all the children finger paint. She assured me the CNA would not be back in there today.

We are shifting our focus to home health care and home schooling. He has done well and responded to what I have taught him with our curriculum. I know for every action there is a reaction and I am sure there will be surprises along the way with this change. I think inspite of all I have to do, the busy days and hectic schedule, he will do better at home. I know he will.

These days that so busy, these days that are fading together, these are the days of his toddlerhood and the time for him to become the person he will be. I cannot let them slip by without having more of an imput in his life.

When my child makes me proud...and sad

Yesterday Artie made me so proud.
First of all, he took his own bookbag to the bus stop. As I was gathering up the phone, my water and myself he grabbed his bookbag. Now, remember, he has back issues so this is not an easy thing for him to do. He carried it most of the way. When he faltered, stumbled and started again, I took hold and helped.
He looked up and smiled and we continued.
That went deep into my heart.
He carried it and I just helped with the weight. He placed it next to the mail box, like we do every morning, and we continued our morning ritual of looking at the trees and trying to spot birds.

It was a beautiful morning. He was getting too warm in that TLSO brace but he kept the cheerful attitude up. Humidity in the land locked south is something oppressive at times.
We practiced mailing a letter. Open the mailbox, put the letter in, close the mailbox, raise the flag and cheer for the letter leaving. Raising his arms up and going through the motions is not easy for him. His back makes it difficult. He loves to mail letters in the morning and check the mail in the evenings. He is so proud to bring the mail to the house. He loves to see the mailman come by even more. Anything with wheels.
When we saw the bus in the distance, we sang our moring song, 'wheels on the bus', and picked up the bookbag.
In the past, I have had to hand him in the bus by lifting him over the steep steps and into the nurses arms. He had to be carried down the narrow isle and placed in his seat and belted in.
This morning he wiggled as I picked him up so I stood him on the bottom step. He tried to go up the steps himself. Of course I helped lift him from step to step. It was not easy for him to lift his leg that high with the brace on. Everyone on the bus was patient. When he reached the floor of the bus he stopped a moment, acknowledged the driver with a beaming smile, and then started to walk to his seat. The nurse stepped in and reached to pick him up. I asked her to wait a moment. He had to twist his trunk slightly to get down the isle. Not an easy thing to do for him. Everyone cheered as he grinned. When he reached his seat he started climbing in. At the point where I knew he was struggling becasue of the bulky brace, I said "now help him" and she turned him to sit in the carseat. He was grinning and the kids were cheering. I stood there with my hand over my mouth, afraid to say anything else. Afraid the moment would pass too soon.
I was so proud of him. Inspite of the steep steps the bulky brace and narrow isle, inspite of the higher than average seat because of the special carseat he rides in, he is now going to do it himself. Independence.
I was so proud of him...and yet sad. Independence is beautiful, yet, that last sneak hug I used to get as I handed him in was missing. Its moments like these that I know he is growing and getting ready for the world, a world I wish I could protect him from.

I want to protect him from people like the ones at 'pray for Trig' who look at Ds as defective and that it makes him less than he is when it IS him. People who, through their own self righteous attitude believe he needs to be different down to his very core. And the ones who for their own selfish entertainment use Ds as a tool to hurt people by posing as something they are not. My beautiful boy.

I want to protect him from the other end of the twisted specturm. The bitter, cruel people who resent him and say terrible things that are not true. The ones who feel he should have never been born. My beautiful boy.

My hope is that he will grow and become one who will have a voice, one who will have a voice for the voiceless. He is growing and it makes me proud...and sad.

Someday he will speak for himself and others. My hope for him is to grow strong.

My sorrow is that my baby is growing up and must meet these challenges. Easy is not going to be part of it. Why? Because others limit him and devalue his life.

So mama bear that I am, this is hard for me.

MIA!

I have been missing in action! My time is divided. My heart is sore.

My brother is terminal and requiring assistance, which I am giving as much as possible. It is heart wrenching.

Artie is missing me and I am missing him...so much. It seems what when I am gone a day and dad cares for him, by the time I am back he has so many new discoveries to show me. I have been missing his day to day life. It was never more aparent than last night after being gone the weekend.

He is talking so much more. He was explaining and signing to me last night. I picked up the words "car","wheels" and "red" as he was signing "me", "car" and "go". What adventure he had on Saturday! He really wanted to share and tried so hard to communicate. I listened intently and responded, encouraging him. What a treasured moment!

I need to be part of his life every day. I really love my boy.

My sweet boy is growing up before my very eyes!